Halfway There: A Personal Reflection on Autism Insurance Reform

This is a guest post by Lorri Unumb, the Senior Policy Advisor and Counsel with Autism Speaks. She teaches a class called “Autism and the Law” at George Washington University Law School and, along with her husband Dan, is the author of a newly-published book by the same name.

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Today, as I sit at my kitchen table reading news accounts of the 25th state autism insurance bill being signed into law by the governor of West Virginia, I get emotional. Six years ago this summer, I sat down at this same kitchen table to write my own bill. The mother of a then-4-year-old son with autism, I was frustrated that health insurance wouldn’t pay for the treatments my son’s doctor recommended. I was tired of reading EOBs that deemed my son’s treatment “experimental.” Or “educational.” Or “non-restorative.” And mostly, I was tired of sitting in support groups with parents who, without coverage from their insurance, could not provide treatment to their children at all.

I wrote a very simple bill – one page of common sense — that said not much more than “health insurance must cover what a doctor prescribes to treat autism.” As a lawyer and law professor at the time, I could not think of any reason why health insurance should not cover our children’s health condition.

I sent my one-page bill to a couple of legislators in South Carolina and asked them to file it in the fall of 2005. The insurers came out swinging against it, as did the Chamber of Commerce and the National Federation of Independent Businesses. But I had assembled a strong group of committed South Carolina families – the “Ryan’s Law Grassroots Gang” – who had compelling stories to tell and were willing to share them.

For two years we fought and negotiated and persevered. We contacted legislators one by one and asked for 15 minutes to explain our situation. We had no lobbyist, no money, and no organizational backing. Our opponents had multiple lobbyists, deep pockets, and their own parking spaces at the state capitol.

In the end, the legislators in South Carolina did the right thing. They passed our little autism insurance bill – twice. They passed it first in the usual course of proceedings and a second time – unanimously – on the last day of the session – June 7, 2007 — after the governor of South Carolina vetoed it.

The law became known as Ryan’s Law, after my son.

In the minutes after Ryan’s Law passed, I stood in the lobby of the state house exchanging hugs, kisses, and tears with families, legislators, and staffers who had become friends in this journey. When the hugging was done, my two best autism pals and I went to a Mexican restaurant, toasted each other with margaritas, and drove home. The celebration was over, and we went back to our real lives.

At the time, I had no idea that our effort in South Carolina would attract national attention and would lead to hundreds of emails from families who wanted to pass the same law in their states. In spite of the standing ovation from our House of Representatives at the moment of final passage, notwithstanding the legislators who shook my hand and thanked me for giving them the opportunity to support the “most important bill we’ve ever passed” – I had no appreciation for the significance of the occasion.

Ryan is now 10. In the years since Ryan’s Law passed, I have had the good fortune to help families across the country advocate for similar autism insurance bills. In 2008, I was invited to join Autism Speaks and, because of their tremendous support, have been able, along with the other dedicated members of the Government Relations team, to develop the expertise needed to take on opponents of autism insurance reform in almost every state across America.

Last year I flew approximately 150,000 miles as part of Autism Speaks’ effort to assist local autism advocates in their efforts. As I reflect on my travels and the 50+ times I have testified in support of autism insurance legislation, what stands out most are the phenomenal families who have stepped out of their comfort zones and engaged in the political process. What stands out are their stories:

The mom who compared the journeys of her two young children – one who had cancer and could get the treatment his doctor recommended, and the other who had autism and could not.

The dad who was forced into bankruptcy and lost his home because he wanted to provide his son needed therapy.

The teenager with autism who had overcome his deficits enough to testify beautifully before a legislative committee and thank his parents for the sacrifices they made so that he could receive therapy.

The parents who had two children with autism but had to choose which one would get therapy because, paying out-of-pocket, they could afford only one.

I cherish memories of the families who never believed their voice could make a difference but now have seen the law change because of their efforts. And I applaud the legislators who have championed our cause only because they knew it was the right thing to do.

At a time when many criticize our government and political system, I am encouraged by the success of our grassroots activism. To me, the autism insurance reform movement is a shining example of democracy at its finest.

Although we have now reached the halfway point, we have a long way to go. Indeed, we have more than “halfway” remaining, because, even in the 25 states that have passed autism insurance laws, many families are still not able to access coverage. Insurers put up roadblocks – roadblocks that will require significant enforcement efforts and legal action to overcome. Many families are insured by self-funded companies that are not subject to their state’s autism insurance laws. (We were one of those families by the way, and, as a result, Ryan was not covered by Ryan’s Law when it passed!)

Nevertheless, today I pause for a moment to celebrate with the many families I’ve been privileged to meet and with my Autism Speaks colleagues – both my 6 Government Relations colleagues and the many others who raise funds to make our work possible and raise awareness to make our work easier. As I reflect on 25 journeys in 25 states that now require insurance to cover diagnosis and treatment of autism, I am reminded of the line I wrote to the Ryan’s Law Grassroots Gang on the day the South Carolina bill became law: “Although I obviously wish my son Ryan were not struggling with autism, I am today very grateful and honored to be part of this autism community.”

I will be very honest here. i appreciate your advocacy of these issues. I wish we had them when my cousin was only 11 and was not medicated and all that the doctors could figure was that by the DSM-III at that time he only had schizophrenia. I am a psychology student now, maybe it has taken me longer to get my degree that i would have liked, but I am curious how we can go on in the autism fight when these children are no longer children. my aunt has had constant fights to find a good place to help train him for life studies but psychologist and caregivers no longer seem to care. I post this here because I read an article today that in your time of celebrating a victory that may have been huge, there is another fight brewing on the horizon that i feel my cousin will, like other times, will catch the bitter end of the train. He is 21, they have cut his mental insurance, and we are considered lucky that they are still covering his medication, which he should probably be seen by a biopsychologist to see if the medication actually helps him. Please take your time to read this article: http://health.msn.com/health-topics/autism/articlepage.aspx?cp-documentid=100271454&page=1
you will see that ryans law, although the starting point, we need to know what to do now for the adults suffering from autism as well.

I see both ways of the cup…I am a mother of 2 sons Asperger’s…19 and 16 Since early years we have been through tremendous undue mostly with public school allot until ASD diagnosis for my oldest 2 years ago. We are working poor so Medicaid OR NO INSURANCE AT ALL has been our life here in Michigan as well many other scenarios. Although I am relieved to know now and have been reading so much and experiencing same stories in my research I am still lost in the woods and overwhelmed what where and how to do. Only thing I know despite is keep on and work hard anyhoo never give up then only will our hopes be realized. This lady walked the first like Grandins mother(how do you think she felt) and so must we all until there is no inequity. Peace

Susie Wilson

June 1, 2011 at 5:22 pm

Victoria, I know exactly how you feel I have an eleven year old grandson with Aspergers syndrome which is the highest form of autism. His name is Noah. He is very hypersentive, very antisocial. He has gotten kicked out of every grammer school. He is so intelligent he skipped the third grade. He finally got sent to a school for troubled kids & when he gets overstimulated the teachers hold him dowm. He comes home crying stating he feels like his arms are gonna fall off. One day he spit on the sidewalk & they rubbed his face in it. I was so upset. He does not belong at this school, when he is here with me you could not ask for a better child. One time when he was in one of the grammer schools the principal called the deputys’ on him. Then she called me cause his mom has to work & his dad won’t have much to do with him. When I walked in the principles office & saw those deputys telling him if they were called again they would handcuff him & take him before the judge & he would be in the system. I had to go into a different room & cried my eyes out. Afterwards & came out & only one deputy was talking to him about going to jail. Noah was only in 4th grade. He had no idea what the deputy was saying. I finally said in my meanest voice. “you need to leave & leave him alone. He has no impulse control & when he is over stimulated he freaks out. The deputy asked me was he on any medicine. I said a lot would you like for me to go home & get it for you. Well he finally left. I told the principal I was getting a lawyer because his civil rights have definately been violated. Anyway her sister & my sister are paralegals & they both work for the same law firm. When she found out my sister worked with her sister, oh she was so sorry. It won’t happen again. She would just call me. It is also hard to take Noah in a store. If we are there longer than I said we would be he would have a meltdown. People would look at us like we were crazy. One man even said to me “He needs his ass whipped.” Yes it is hard. I hate he has to take so much medicine, but without it he just can’t function at all.

Dear Ms. Unumb,
I applaud your due diligence and efforts to champion autism insurance reform and extend my heartfelt thanks for all you have achieved on this front. It is regrettable that this war that we fight for our children must be fought on so many fronts: i.e. increasing autism awareness, funding and driving scientific research, procuring insurance reform and enforcing IDEA in education. To that end, I was wondering what your thoughts are in attaining compulsory federal or state enforcement of IDEA as it pertains to special education and autism. It has been my experience that the current status quo allows the compliance deadlines set by The Individuals with Disabilities Education Act to be flagrantly disregarded and “legally” extended on behalf of the Department of Education to the utter detriment of the special education student. On the whim of a singular Administrative Tribunal Judge, the special education student’s secondary educational window is routinely eroded, and the student and their family are victimized time and time again by a system seemingly set against them. The rationale behind these judicial determinations are never based on the solid premise of law but on arbitrary and inane excuses provided by the DE for noncompliance with IDEA. The legal precedent seems to be to wear the Plaintiff down until they surrender, or the student ages out of the system; thereby effectively denying the autistic child their civil right to an education. In my son’s case I have been in court for over six years, have filed a complaint with OCR, and even written President Obama regarding this issue but have yet to receive any sort of hope or relief. The issue is not whether my son, Daniel, is entitled to the services we are demanding on his behalf for they are clearly stated on his IEP; the consensus has always been that he was entitled to them; however, it seemed the strategy was to legally postpone compliance until Daniel aged out and they would no longer have to provide them. So, deadlines set by the court itself were continuously extended precluding him from attending school. Needless to say I am fed up as are many of the parents of autistic children I have met along the way and would like to hear your ideas on how to more effectively address this issue and affect change.

Lori,
I don’t know if you remember me but I was in your home around that time that you speak of when you were constructing that bill. I was one of Ryan’s therapists that worked in collaboration with SCEAP…I am so happy to see how much triumph you’ve brought to this world of autism. I am still working with children who struggle with autism and I continue to donate my time among other things to this great autism awareness cause. I hope all is well with the rest of your family and thank you for being so wonderful.
All my best,
Stephanie Sluka (Wharton)

Stephanie Wharton Sluka :
Lorri,
I don’t know if you remember me but I was in your home around that time that you speak of when you were constructing that bill. I was one of Ryan’s therapists that worked in collaboration with SCEAP…I am so happy to see how much triumph you’ve brought to this world of autism. I am still working with children who struggle with autism and I continue to donate my time among other things to this great autism awareness cause. I hope all is well with the rest of your family and thank you for being so wonderful.
All my best,
Stephanie Sluka (Wharton)

I am an Aspie, single, haven’t married yet, I live in Virginia. At least Virginia seems to get it should I get married and she insist on kids. I would caution her that the odds are likely she could have children with Asperger or otherwise in the autistic spectrum, and that if she wants to stay at home with them, the primary responsibility for raising them will inevitably fall on her rather than be shared more evenly. Yes my brother and I are gifted computer professionals but it should not be forgotten whose sacrifice it was to teach us to use our gifts in a cruel world, and it really was not Dad’s affair. Working late was his idea….

Almost nothing is fair. Having kids is not fair. They may have disabilities. Nobody asks for it. If you can accept that and still have kids, go for it.

I don’t think, if you have a choice, the United States is the best country to raise a child. Big interests run roughshod over little families with little government protection. You’re better off in Europe or Canada with, among other things, some measure of guarantee of public health care and paid maternity leave.
Otherwise you get to pull yourself up by your bootstraps no matter how barefoot and pregnant you are.

this is really great and I applaud your hard work…after several thousands of dollars on diagnosis, treatments, therapies and of course the extra money for tutoring and education..we are at the end of all savings..and at 16, we can only hope that he has learned enough to get by…which is a shame for he is capable of so much more…but we can no longer afford it!
Now on to education for our children

Thanks for giving information regarding insurance forms for autistic children. that will surely help those autistic kids that are still studying. Lots of people believe that student medical insurance plans are wastage of funds, But these health insurance plans for kids and studying students are very helpful at the time of injuries.

I happened upon your blog today and was very enlightened by the progress for the people with autism. I have worked with Special Needs in the school system and in adult workshops and have made many friends who have autism. Little did I know what this was preparing me for. My daughter, Emily, married a man 2 1/2 years ago. We knew Abe was “different” but thought he was just spoiled rotten being an only child and we could bring him out of that! They had a long distance relationship and engagement. No more that I was around him I soon recognized many signs of autism but did not finalize my thoughts that he definiately had full blown autism until after they were married and moved from Illinois to our hometown in Indiana because he could not keep a job. She moved back to her job as an Assistant Teacher in an Essential Skills class at our local high school. A year after they were married they had their first child and Emily started showing signs of depression. I thought it was post partum. After a lot of encouragement from close family members to see her doctor, she did and was diagnosed with Situational Depression.
When Wesley was 4 months old I done an intervention and contacted Indiana Resource Center for Autism and got a hold of an advocate who guided us through the process of getting a diagnosis. Abe was evaluated by two different psychotherapist and both evaluations proved he had Asperger’s, which we have found out since that all the symptoms were there all through his childhood but were grossly ignored by his parents, and PTSD. The PTSD stemmed from a horrible tractor accident when he was 5. His baby brother was 3 and they were riding in the front bucket of and tractor his dad was driving and his brother fell out and was ran over by the tractor. His diagnosis at the psychologist was ADHD. He was put on the medication Vyvanse and it did help calm him down considerably. He had almost stopped all his tics, rubbing his chin, back of his head, pacing, not being able to stay in one place for more than 5 minutes etc…My question is….is ADHD or Asperger’s either one considered a disability and would he be a candidate to apply for disability so they could at least have some steady financial support since he is unable to provide that. Ironically he has his Masters Degree in journalism and communications but, his social skills are so bad that it is getting in the way of him being able to work efficiently or hold a job. He is extremely self absorbed and has not bonded with their 18 month old baby. It is really sad to watch. They went to counseling all last winter and the results from that were more to help our daughter know what to do in certain situations in the home such as helping out around the house, staying focused when doing task etc…. With him not being able to hold a job and with the lack of him not caring if he works or not has caused a financial hardship and he is not on his medication because he does not have the money to buy it and all of his nervous habits have returned. Also, he does not have the first clue of how to care for the baby and would be very dangerous to leave the baby in his care. I heard about a free med clinic nearby and he has an appointment there.
I am going to counseling because I need to know just what my boundaries are in this situation. My biggest fear is that something will happen to the baby under his watch. Emily is not accepting how serious it is to leave the baby with Abe even for an hour with is inability to focus. Anything could happen. I have given her many different scenarios that could easily happen but she is not dealing with reality in so many aspects of her life in general.
I guess I am desperately seeking any advise for their situation, financially, emotionally, physically etc… Mostly to know if Abe would be eligible for disability.
My e-mail address is… nannykcmap@embarqmail.com. What ever advise or help you have would be appreciated.
Trena Palmer

I am Ronnie P. Basit here in the Philippines with my email: basitronnie@yahoo.com. my child has been diagnosed with an autistic when she was 5 years old and until now I could not give therapies or program that is right to my child even she was not medicated and I have no idea what treatment options or medical interventions that would bring her into a productive life. I need or seeks out support groups to help since I am financially burdened. I need to know what to do and I am curious on how since she is 15 years old now.
Lastly, your country is the best country I have known for this matter. Thank you.

I am so exited about this… THANK YOU AND YOU JUST DON”T KNOW HOW MUCH… for my Adam, for my little girl Cindi. And all those of us who grew up wihtout hope. You are our hope. THANK YOU SO MUCH. I stay up at night worying about the future for my kids since we don’t have any family or anyone. Is just us against the world and its a heavy load. You are helping us carry it.